Hydroxychloriquine side effects

TerryBn
TerryBn Member Posts: 4
edited 11. Sep 2025, 07:13 in Living with arthritis

I'm a 72 yr old male recently diagnosed with sero negative inflammatory arthritis. I first started noticing stiffness and increased pain in Mar/April but put it down to the work I was doing. My wife and I upsized instead of downsized when we retired and we've been doing up a house and garden 🤔. By mid May my hands, ankles and feet were almost twice normal size and I was in a lot of pain. I was put on a fast track to a consultant although had to wait 5 weeks and then was diagnosed on 1st July. I was give an 8 week course of Steroids which were miraculous and I was back to normal within a week. I then started once per week Methotrexate injections on 22nd July with no obvious side effects, and then Folic acid 3 times per week and Hydoxychloriquine about 3 weeks ago. The Hydroxychloriquine seems to have given rise to some side effects.: itchy eyelids, a slight upset stomach - now ok, some weird dreams, a wooly feeling and slight head achy feeling first thing in the morning, but more seriously I feel very tired and lacklustre which is just not like me. I just feel I can't be bothered. At my last telephone review with my Rheumatology nurse (who has been brilliant), she reduced my Hydoxychloriquine to 1 per day and we will review in just over a weeks time when I will also have another blood test. The other thing I am a bit concerned about is that my serum C reactive protein level was 28 before I started treatment. After steroids it went back to normal then 3 weeks ago after I finished steroids it went back to 20 and then last week it was 60. Even the nurse thought it was high. At the moment I don't have any extreme pain and have been promised steroids If it flares up, but I am a bit concerned about the 60 number. Sorry about the length of this, but I would welcome any input or similar experiences with Hydroxychloriquine or any other thoughts.

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Comments

  • Anna
    Anna Moderator Posts: 1,218

    Hi @TerryBn and welcome to the online community,

    I’ve been on hydroxychloroquine for nearly thirty years and it has made a real difference to my life, and I hope you have the same experience. I haven’t had too many side effects though, apart from an occasional upset stomach and mild tinnitus. I’m also careful to always use sun cream when I go out because it does make me hypersensitive.
    It will be interesting to hear if others have similar side effects to you, although only a few of the ones you mention are in the side effects information leaflets that I’ve linked to below:

    https://versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

    https://versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

    It would be best if you mention all your symptoms to your Rheumatologist professional, especially since you’ve only just started on the medications and they might need some adjustment. The level of 60 for your C reactive protein level should also be discussed with your professional, since, as you say, it is rather high.

    Do let us know how you’re getting on,

    Anna ( Moderator)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Eeyore
    Eeyore Member Posts: 60

    Hello @TerryBn

    I was given hydroxychloroquine when the methotrexate wasn't working too well. 2 tablets a day. By the second day of treatment I had horrendous tinnitus and felt generally unwell. The rheumatoid nurse reduced the dose to one tablet a day but that didn't improve things and I felt really unwell and barely able to function! So I came off that and eventually was given a biologic. There are other options so hopefully the rheumy nurse will have a solution for you. Good luck!

  • Eeyore
    Eeyore Member Posts: 60

    Hello @TerryBn

    I was given hydroxychloroquine when the methotrexate wasn't working too well. 2 tablets a day. By the second day of treatment I had horrendous tinnitus and felt generally unwell. The rheumatoid nurse reduced the dose to one tablet a day but that didn't improve things and I felt really unwell and barely able to function! So I came off that and eventually was given a biologic. There are other options so hopefully the rheumy nurse will have a solution for you. Good luck!

  • TerryBn
    TerryBn Member Posts: 4

    Many thanks Anna, I will follow your advice and talk again to my Rheumatologist.

    Terry

    Thanks eeyore, I'll ask about alternatives.

  • toady
    toady Member Posts: 2,926
    edited 10. Sep 2025, 19:13

    Hi @TerryBn, I'm a long time Hydroxy user, just wanted to mention that as well as the possibility it isn't the drug for you there are differences between brands - which made a significant difference to me as to side effects. It isn't cut & dried because some people tolerate one & not another & vice versa, but having said that there are 1 or 2 in particular that do seem to upset people me included. I wish I had been aware of this at the time Plaquenil, the original drug supplied by most pharmacists, was de-branded and generics came in 🙄. You do say some of the side effects have improved so it may be just a matter of your body getting used to them. Glad to hear you have an excellent nurse and good luck with your treatment in general; I am also seronegative inflammatory.

    In the event the methotrexate is not working as well as they'd like (although that is early days), then it is also worth mentioning that hydroxy does count as 1 of 2 DMARDs to have failed on before they will offer you a biologic, which was a lifesaver for me - assuming that is still the case and applies to your local trust etc. But as I say very early days - what dose of metho are you on?

  • TerryBn
    TerryBn Member Posts: 4

    Hi Toady, thanks for your input and feedback. The Hydroxy I'm on is from IPCA Laboratories and is a film coated version.

    My Metho dose is a 25mg solution using a Metoject pen once a week.

  • toady
    toady Member Posts: 2,926

    Morning @TerryBn . If I recall correctly the IPCA labs formulation is the same as Quinoric / Bristol Labs, which is one of the more frequently reported for being difficult to tolerate, but I will double check. I have found this to be a very good article and puts a lot of the info in a nutshell. Treatments – Hydroxychloroquine Prescriptions | Lupus UK

    Again side effects are all a personal user experience thing &c but just worth knowing about. I take Zentiva brand personally which I get on with as well as I did Plaquenil (all the brands have the same active ingredient but differ as to fillers etc).

    From what you say it seems you started Methotrexate injections without having taken the tablet form first? In which case well done sidestepping the tablets the injectable form is less problematic for people generally 👍️ there is room for them to increase the dose if they feel it is currently not working as well as it could, 25mg is quite low. Good luck with everything :)

  • TerryBn
    TerryBn Member Posts: 4

    Thanks again, yes I was lucky going straight to Metho injections from what I've read. Thanks for sending the link to the article on Hydrox. I really had no idea there could be so much difference between formulations.

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